California pushes insurance companies to cover autism treatment

California parents of children with autism have fought for years to get health insurers to cover behavioral therapy for their kids, so when a state regulatory agency announced an agreement with two major health plans to cover the treatment, many breathed a sigh of relief.

But hope turned quickly to frustration as details of the health insurance coverage agreement came to light. In a recent letter asking Gov. Jerry Brown to take action, the Consumer Watchdog organization and several autism advocacy groups called the settlement "a sham that provides no solution."

The California Department of Insurance regulates all other preferred provider organization medical plans as well as individual health insurance plans.

Each agency is taking a different approach to enforcing state laws regarding autism treatment coverage.

Seeking affordable medical insurance

Last month the California Department of Managed Health Care, the HMO regulator, announced a settlement agreement with Blue Shield of California and Anthem Blue Cross to cover Applied Behavior Analysis (ABA). The intensive treatment, based on behavior conditioning techniques, is widely used to help children with autism learn communication, social and other skills.

"The DMHC has worked tirelessly over the last few years to provide coverage for the appropriate and effective treatment to children suffering from the potentially devastating effects of autism spectrum disorders," Edward G. Heidig, the agency's interim director, said in a prepared statement. "Rather than just dealing a onetime blow to health plans through an enforcement action, this is another positive step towards mending the broken system for California families dealing with this issue."

But consumer advocates quickly found holes in the breakthrough.

Among other things, the settlement agreement allows health insurance companies to require ABA therapy providers to be licensed by the state or to be supervised by a licensed provider as a condition for coverage. But there is no state license for ABA therapy providers, Jacobson says. The field is specialized. Licensed marriage and family therapists and licensed social workers usually aren't trained in ABA. Under the settlement, nationally board certified ABA specialists would not qualify as supervisors. Moreover, the settlement does not require the health plans to set up provider networks.

Jacobson says she thinks the agreement is well intentioned.

"I think the people who were crafting it were really trying to do something good."

But, she says, "it's a Catch-22 for families. It results in a provider pool that's close to zero."

Jacobson says she has worked with more than 40 families in the last several years, fighting for health insurance coverage for ABA. "It takes months and often up to a year to get through all the appeals processes, and sometimes it requires appealing all the way to the state regulatory bodies. And even then it can still be impossible to get. It should not be this hard."

ABA therapy is costly

ABA therapy is not cheap. It often involves a professional working one-on-one with a child 25 to 40 hours a week and can cost as much as $70,000 a year. Many families cobble together whatever services they can afford because time is precious. Autism treatment experts recommend intervention as soon as a child is diagnosed.

"You can't afford to wait a year," Jacobson says.

Jerry Flanagan, a Consumer Watchdog staff attorney, says the groups have not received a response to their six-page letter to the governor, detailing their objections to the agreement with Anthem and Blue Shield.

His group sued the Department of Managed Health Care in 2009, challenging, among other things, its position that ABA can be covered only if care is provided by licensed professionals. The department prevailed on that point in Los Angeles Superior Court in 2010, and Consumer Watchdog is appealing.

"The issue of expanding health coverage for certain autism treatments continues to be an issue in California's legislature and courts," Department of Managed Health Care spokesperson Lynne Randolph says. "We have been working with families for the past several years on a case-by-case basis to get needed services.”

Meanwhile, the agency that regulates non-HMO health plans -- the Department of Insurance -- is taking a different tack. It filed an enforcement action against Blue Shield last month, saying Blue Shield failed to comply with the California Mental Health Parity Act when it denied coverage of behavioral therapy for autism treatment. The settlement agreement between the insurer and the Department of Managed Health Care has no bearing on this matter.

Parents seek government support

The action came after two parents of children with autism sought the department's help following Blue Shield's denial of coverage.

The Department of Insurance argues that Blue Shield violated the law by not including ABA providers in its network and denying coverage on the grounds that ABA isn't medically necessary, is experimental, is not a health care service and is available only for services provided by a licensed provider. Unlike the Department of Managed Health Care, the Department of Insurance does not allow insurance companies to require licensure of ABA providers as a condition for coverage.

Blue Shield of California COO Paul Markovich says he was "perplexed" by the department's order. "Several weeks prior to the issuance of this complaint, the department was aware that Blue Shield had agreed to cover the services requested in these two cases. We also informed the department that we will cover ABA services in all such cases until the underlying legal issues are resolved in court."

But Department of Insurance spokesperson Ioannis Kazanis says the insurer agreed to provide coverage only after the threat of an enforcement action. He says the department will argue its case before an administrative law judge and is working to set a date as soon as possible for a hearing.

As for other insurance companies that deny coverage for ABA?

"We are aware of other insurers engaging in such practices, and after we've reviewed those cases, we will closely evaluate our options and act accordingly."